The experience of stigma related to hearing loss and hearing aids: perspectives of adults with hearing loss, their families, and hearing care professionals.

OBJECTIVES: To explore when and how stigma-induced identity threat is experienced by adults with hearing loss (HL) and their family members (affiliate stigma) from the perspectives of adults with HL, their family members, and hearing care professionals. DESIGN: Qualitative descriptive methodology with semi-structured interviews. STUDY SAMPLE: Adults with acquired HL (n = 20), their nominated family members (n = 20), and hearing care professionals (n = 25). RESULTS: All groups of participants believed that both HL and hearing aids were associated with stigma for adults with HL. Two themes were identified, specifically: (1) an association between HL and hearing aids and the stereotypes of ageing, disability, and difference; and (2) varied views on the existence and experience of stigma for adults with HL. Hearing care professionals focused on the stigma of hearing aids more than HL, whereas adult participants focused on stigma of HL. Family member data indicated that they experienced little affiliate stigma. CONCLUSIONS: Stigma-induced identity threat related to HL and, to a lesser extent, hearing aids exists for adults with HL. Shared perceptions that associate HL and hearing aids with ageing stereotypes were reported to contribute to the identity threat, as were some situational cues and personal characteristics.

A laughing matter? Managing hearing difficulties in real life everyday social interactions with adults with hearing loss.

OBJECTIVE: This study examines the interactional management of hearing difficulties and hearing aids (HAs) in real-life, video-recorded social interactions with adults with hearing loss (HL) and their families/friends. DESIGN: 32 video-recordings in various social settings were analysed using Conversation Analysis. STUDY SAMPLE: 20 adults with HL and their families/friends. RESULTS: HL and/or HAs did not typically become explicit in conversation. When adults with HL' hearing difficulties did become explicit in the conversation, they were typically accompanied by laughter/humour. Sometimes the humour/laughter was initiated by the person with HL themselves (i.e. self-directed joking) but more frequently it was initiated by someone else within the conversation (i.e. a tease). CONCLUSIONS: The findings display the management of the "to tell or not to tell" dilemma in practice, and how humour was often used to lighten the tension when "telling" about HL and/or HAs. The findings also highlight that not all humour is equal: there are different outcomes for adults with HL depending on who initiated the humour/laughter within the context of the interaction. This study highlights stigma-in-action - how stigma related to HL and/or HAs is occasioned and managed within real-life social interactions.

To tell or not to tell? Exploring the social process of stigma for adults with hearing loss and their families: introduction to the special issue.

OBJECTIVE: Stigma has long been implicated as a reason why adults with acquired hearing loss are slow to seek help and for sub-optimal uptake of hearing devices. However, the field has not developed a comprehensive understanding of why stigma occurs, nor has it related this comprehensive knowledge to a theoretical framework. DESIGN: This special issue presents results from a two-phase, multi-method study to systematically investigate how stigma is experienced by adults with hearing loss and their families, how they manage it in everyday life, and how these experiences relate to the decision to wear hearing aids. STUDY SAMPLE: Phase 1 of the study involved 20 dyads of adults with hearing loss and their family members. Phase 2 involved 331 adults with hearing loss and 313 family members. RESULTS: Results of the study are presented in each of the subsequent papers that are part of this special issue. Results are mapped onto the Major and O'Brien model of stigma-induced identity threat in each paper. CONCLUSIONS: This paper provides an introduction to the Special Issue and describes the methods for the overall study that is the focus of the papers within the issue.

Improving the implementation of family-centred care in adult audiology appointments: a feasibility intervention study.

OBJECTIVE: There is mounting evidence for implementing family-centred care (FCC) in adult audiology services, however FCC is not typically observed in adult clinical practice. This study implemented an intervention to increase family member attendance and involvement within adult audiology appointments. DESIGN: The study involved a mixed method design over three key phases: Standard Care, Intervention I (increasing family member attendance), and Intervention II (increasing family member involvement). STUDY SAMPLE: Staff from four private audiology clinics within one organisation participated in the intervention. Data was collected from different clients in each phase (n = 27 Standard Care, n = 30 Intervention I, and n = 23 Intervention II). RESULTS: Family member attendance increased from 26% of appointments in Standard Care to 40% at Intervention I, and 48% at Intervention II. Family member involvement also showed improvement on some measures (video analysis) although talk time did not significantly increase. Significant improvements in client satisfaction with services were found (Net Promoter Score and Measure of Processes of Care). CONCLUSION: The implementation of FCC in audiology clinics needs to be an ongoing, whole-of-clinic approach, including staff in all roles. Increasing family member attendance at adult audiology appointments can lead to benefits to client satisfaction with services.

How Can eHealth Meet the Hearing and Communication Needs of Adults With Hearing Impairment and their Significant Others? A Group Concept Mapping Study.

OBJECTIVES: To seek the perspectives of key stakeholders regarding: (1) how eHealth could help meet the hearing and communication needs of adults with hearing impairment and their significant others; and (2) how helpful each aspect of eHealth would be to key stakeholders personally. DESIGN: Group concept mapping, a mixed-methods participatory research method, was used to seek the perspectives of key stakeholders: adults with hearing impairment (n = 39), significant others (n = 28), and hearing care professionals (n = 56). All participants completed a short online survey before completing one or more of the following activities: brainstorming, sorting, and rating. Brainstorming required participants to generate ideas in response to the focus prompt, "One way I would like to use information and communication technologies to address the hearing and communication needs of adults with hearing loss and their family and friends is to…." The sorting task required participants to sort all statements into groups that made sense to them. Finally, the rating task required participants to rate each of the statements according to "How helpful would this idea be to you?" using a 5-point Likert scale. Hierarchical cluster analysis was applied to the "sorting" data to develop a cluster map using the Concept Systems software. The "rating" data were subsequently analyzed at a cluster level and an individual-item level using descriptive statistics. Differences in cluster ratings between stakeholder groups were examined using Kruskal-Wallis tests. RESULTS: Overall, 123 statements were generated by participants in response to the focus prompt and were included in subsequent analyses. Based on the "sorting" data and hierarchical cluster analysis, a seven-cluster map was deemed to be the best representation of the data. Three key themes emerged from the data, including using eHealth to (1) Educate and Involve Others; (2) Support Aural Rehabilitation; and (3) Educate About and Demonstrate the Impacts of Hearing Impairment and Benefits of Hearing Rehabilitation. Overall median rating scores for each cluster ranged from 3.97 (educate and involve significant others) to 3.44 (empower adults with hearing impairment to manage their hearing impairment from home). CONCLUSIONS: These research findings demonstrate the broad range of clinical applications of eHealth that have the capacity to support the implementation of patient- and family-centered hearing care, with self-directed educational tools and resources typically being rated as most helpful. Therefore, eHealth appears to be a viable option for enabling a more biopsychosocial approach to hearing healthcare and educating and involving significant others in the hearing rehabilitation process without adding more pressure on clinical time. More research is needed to inform the subsequent development of eHealth interventions, and it is recommended that health behavior change theory be adhered to for such interventions.

Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions.

AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness. RESULTS: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness. CONCLUSIONS: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.

Attending to child agency in paediatric palliative care consultations: Adults' use of tag questions directed to the child.

Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and complex conditions that often impact their ability to verbally communicate with others. This study explores how clinicians and parents/guardians direct talk towards a child patient when they are present in a consultation. Conversation analysis methods were used to examine 74 video-recorded paediatric palliative care consultations. Detailed turn-by-turn examination of the recorded consultations identified the recurrent use of a practice described by linguists as a 'tag question', which follows some statement (e.g. 'he loves that, don't ya'). Both clinicians and parents/guardians often directed these tag questions towards the child patient. Analysis demonstrated how these tag questions: (1) validated the child's epistemic authority over what was being said and (2) made a child's response a possible, but not necessary, next action. The findings are discussed in relation to the sociology of child agency and how this agency is acknowledged and displayed within and through social interaction. This research provides direct evidence of children's competence as informants about their own symptoms.

Communicating with patients and families about illness progression and end of life: a review of studies using direct observation of clinical practice.

BACKGROUND: There is growing recognition that a diverse range of healthcare professionals need competence in palliative approaches to care. Effective communication is a core component of such practice. This article informs evidence-based communication about illness progression and end of life through a rapid review of studies that directly observe how experienced clinicians manage such discussions. METHODS: The current rapid review updates findings of a 2014 systematic review, focussing more specifically on evidence related to illness progression and end-of-life conversations. Literature searches were conducted in nine bibliographic databases. Studies using conversation analysis or discourse analysis to examine recordings of actual conversations about illness progression or end of life were eligible for inclusion in the review. An aggregative approach was used to synthesise the findings of included studies. RESULTS: Following screening, 26 sources were deemed to meet eligibility criteria. Synthesis of study findings identified the structure and functioning of ten communication practices used in discussions about illness progression and end-of-life. CONCLUSION: The ten practices identified underpin five evidence-based recommendations for communicating with patients or family members about illness progression and end of life.

Use of the Behaviour Change Wheel to design an intervention to improve the implementation of family-centred care in adult audiology services.

OBJECTIVE: This study describes the development of an intervention to improve family-centred care in adult audiology services. DESIGN: The Behaviour Change Wheel (BCW) was followed to develop the intervention. The BCW involves eight steps across three stages: (1) understanding the behaviour, (2) identifying intervention options, and (3) identifying content and implementation options. STUDY SAMPLE: The data in Stage 1 comprised of 13 interviews with clinic staff. The research team drew on their own expertise and empirical research to complete Stages 2 and 3. RESULTS: A two-phase, face-to-face intervention was developed to change clinic staff' behaviours to address two problem behaviours: (1) increase family member attendance to adult audiology appointments; and (2) increase family member involvement within appointments. Three target behaviours were chosen for the intervention to address the two problem behaviours. A variety of intervention functions and behaviour change techniques were incorporated into the intervention. CONCLUSION: The BCW provided a useful framework for developing a whole-of-clinic intervention to increase family member attendance and involvement in adult audiology appointments. Recent research in social psychology has suggested that this type of family involvement and support in healthcare is a strong predictor of well-being for adult clients and their families.

The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study.

BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health communication during pandemic times. However, it is unknown how communication within consultations might change during pandemics. AIM: This study, a sub-study of a larger project, aimed to examine real-world instances of communication in paediatric palliative care consultations prior to and during the COVID-19 pandemic to understand how clinicians and families talk about the pandemic. DESIGN: Paediatric palliative care consultations prior to, during, and immediately following the initial peak of COVID-19 cases in Australia were video recorded and analysed using Conversation Analysis methods. SETTING/PARTICIPANTS: Twenty-five paediatric palliative care consultations (including face-to-face outpatient, telehealth outpatient and inpatient consultations) were video recorded within a public children's hospital in Australia. Participants included 14 health professionals, 15 child patients, 23 adult family members and 5 child siblings. RESULTS: There was a pervasive relevance of both serious and non-serious talk about COVID-19 within the consultations recorded during the pandemic. Topics typical of a standard paediatric palliative care consultation often led to discussion of the pandemic. Clinicians (55%) and parents (45%) initiated talk about the pandemic. CONCLUSIONS: Clinicians should not be surprised by the pervasiveness of COVID-19 or other pandemic talk within standard paediatric palliative care consultations. This awareness will enable clinicians to flexibly address family needs and concerns about pandemic-related matters that may impact health and wellbeing.